Mireille Silcoff: The trouble with my bones, and with healthcare

Sometimes I wonder whether these pages are the right platform for writing about illness. Nobody wants sick cells in their coffee on a Saturday morning. But then I think: there is writing lugubriously about illness and there is writing about illness the way you might write about anything else. You try to be honest, see some bigger picture. There are only a few things everyone in the universe can relate to: birth, death, love, loss, and somewhere in all that, illness.

I live with more of it than anyone else I know. By “know” I mean people in my immediate circling of family and friends. My grandfather is 104 and, on paper, much healthier than me. If there is a spare nook or cranny in my life, it will, guaranteed, soon be filled by some crazy syndrome that is so rare most GPs need to look it up, brows knit.

My nature abhors a vacuum. So I have trained myself to become something like the opposite of hypochondriac. I am somebody who is often unwell but uses a good deal of her available strength not to succumb to it, or at least, to succumb creatively. I have stated before that I cannot go into a doctor’s office without coming out with something fascinating and I am about to repeat that idea now, albeit with new, troubling details:

This past June, I sat before a Montreal neuro-endocrinologist who looked at some results and then looked at me and said:

“You know you have the bones of a 95-year-old woman.”

Let’s take a moment here to discuss delivery. There are many, many ways a doctor can tell a happy, hopeful 39-year-old woman with a new baby at home, a person considering a second child, a person who already has medical issues that impinge her on a daily basis, that she also has severe osteoporosis.

He could say, simply:

“You have osteoporosis, and it is not a mild case. That is rare for someone of your age.”

He could say:

“Do you know you have osteoporosis? Let me explain it to you. And then I will tell you what we can do about it.”

But no. It’s “a 95-year-old woman.” So I now have some spectre of an old lady living inside me. I get a new haircut; I put on a nice dress. I look in the mirror, and I think, “Hey! Pretty damn good!” and then a gravelly inner voice — one that sounds uncannily like my doctor’s — rises up and says, “Don’t kid yourself. On the inside, you are a withering nonagenarian.”

A doctor giving bad news needs to employ artistry, but he does not need to employ drama. Usually, there is enough drama in the information (compared with a healthy adult Canadian, I am missing 36% of my bone mass). A doctor employing needless drama in the transmission of bad diagnoses has lost his heart, and should go somewhere and do something to retrieve it.

Related

Last weekend, I listened to a wonderful conversation, one from 2000, between CBC Radio’s Eleanor Wachtel and the writer and thinker Susan Sontag, who died of cancer in 2004. Over the span of her life, Ms. Sontag had cancer three times. Here she spoke of the first time she had it, in the 1970s, and then of having another kind of cancer in the late 1990s. Ms. Sontag said that in the ’70s, most patients didn’t even know the names of the drugs they were on, while in the 1990s, people were much better informed, constantly “pulling out their printouts from the computer,” and “exchanging hot tips” on treatment. The knowledge was gleaned from the Internet. The information, she said, gave the patients power.

In my experience, doctors do not love it when you pull out printouts. In my experience, with so many time-strapped doctors in Canada, corroded by the demands of the breaking system, there is not much choice. I have a long-standing, highly unusual spinal cord condition — the tissue tears, causing spinal fluid leaks — which required treatment outside of Canada a few years ago.

In the United States, I paid through the nose, paid enough to go bankrupt in fact, but I got what I paid for: clarity, information, nothing falling between cracks, lateral thinking, every effort expended in treatment. In terms of my own understanding of my spinal cord tissue, it was a big turning point. And from there, I learned how to live well with the condition.

I am sure that the Montreal doctor who dispensed my most recent diagnosis is a man with normal sensitivities and sensibilities outside his office. But the entirety of the information I have so far received from his bureau, where the average face time with the MD during an appointment is five minutes, and where the doctor spends half those minutes talking to the interns he is teaching (Specimen A: 95-year-old trapped in body of 39-year-old.) is:

a. I have severe osteoporosis, which is rare for someone in her thirties.

b. The doctor suspects an underlying genetic tissue disorder called Ehlers-Danlos syndrome. It could be the source of my porous bones and also my strangely tearing spinal cord.

c. I need to go on a drug, for osteoporosis.

d. The drug is called Forteo. I will have to inject it daily.

e. It will cost $20, 000 a year.

f. The people from Eli Lilly, the pharmaceutical company that makes Forteo, will be telephoning me to discuss. They will tell me everything I need to know about my treatment.

And so, to the Internet. I soon find out that nobody knows how Forteo builds bone. It can improve bone mass, but the method in which it does so is a complete mystery. In lab rodents, it has caused bone cancer. It has caused tumours in rats to the extent that in Canada, a human being is only allowed to take Forteo for two years in a lifetime. Forteo has a large range of side effects, including nausea, dizziness, weakness and joint pain. Some of these are noted in an astonishing 14% of those taking the drug. You must not conceive while on Forteo. You must be off the drug for months before trying.

Lately, the folks from the Eli Lilly Company have been phoning me. I get calls from customer care, as if from the Hoover man. Sometimes it’s a nurse, sometimes it’s a person calling to talk about a medic coming to my house to show me how to use the drug, and sometimes it’s someone who is there solely to help me get insured. In the wild world of Quebec medicare, if you have severe osteoporosis and you are a woman of 70, you are worthy of coverage. But if your bone mass is disintegrating when you are pre-menopausal? Contrary to all good sense, you are most likely on your own.

At present I speak to someone from Eli Lilly about once a day. Once a day I pick up the receiver and it’s Big Pharma phoning. Given my proximity to embarking on a possibly carcinogenic treatment, a treatment for a bone condition that likely has an underlying tissue disorder at its root, a disorder for which I have not even had the genetic tests yet, a disorder that is heritable, heritable from one side, meaning there is a not-tiny chance that I have passed it down to my child, and given that this fact alone keeps me up all night, hankie-twisting, once a day seems about as often as I should be speaking to a real doctor right about now.

But I am not speaking to my doctor. I am speaking to salespeople. And their main, perhaps sole, interest in me, is that I take a total of $40, 0000 worth of a drug with a gratingly superheroic name.

In general, I have had more esteem than complaint for our Canadian healthcare system. I have often seen it as a group of people — doctors and patients — doing their best in a highly imperfect situation. But I only need to glance at my current state of affairs to know that the way it is being handled is wrong — all of it, perverted. A corporation with specific interests has usurped my doctor in my treatment.

But I refuse to go elsewhere to treat osteoporosis, the way I went for spinal fluid leaks. Spinal fluid leaks required a specific expert, but osteoporosis can be cared for perfectly well in my hometown. And so of course I will look for more doctors, and of course I will continue asking my current doctor for more information, for any information, for genetic tests that he doesn’t think are urgent, and which I do. I learned a long time ago to ask that desperate question of my doctors: If it were your child what would you do, doctor? What would you do? If it were your child?

But for now, I submit to the care of the world wide web, and that of a pharmaceutical company. The Hoover salesmen have entered my home. At the moment, the only thing I can do is welcome them.